Non-verbal autism – Vicki Neely

To Joshua on your 15th Birthday

Dear Josh,

I can’t believe you are 15. When you were born- even before- I couldn’t think past the first few years. I always pictured you as a little boy, never thinking about teenage or adult years.

So much focus in our world is on young children. It almost seems like moms stop being moms when kids reach a certain age but we know that’s not true. Kids need their moms at all ages.

But especially you. You still really need me.

It makes me happy and sad all at the same time. That’s called bittersweet and I think it describes life so well.

You know I thank God for you every single day. I tell you how much I love you and you see my eyes glisten with tears when you look at me with your gorgeous almond pools of blue.

I mostly cry because I’m overwhelmed with the joy that is you.

But I have a confession- I sometimes get a little sad when I think about what you might be doing. I used to let these thoughts consume me. Now I wonder if you wish things were different or if you miss doing certain things.

Sometimes I’m afraid to express any sadness or question anything will let all those who think you aren’t perfect just the way you are be justified in their thinking.

You were born perfect as much as your brothers and sister and as perfect as any other child.

You are unique and exquisite. Fearfully and wonderfully made.

But sometimes I go there- to the place of “what if”…

Take your birthday. You can’t tell me what you want for presents or what you want to do.

Birthdays are different for you. You don’t talk about what you want to do a year in advance. You don’t ask for a party or request your favorite meal or even have a say in what kind of cake you get.

Would you want to have a party, or just some friends over to hang out and play video games? Would you even like video games? Would you want to go to a movie? Out to dinner? You can’t tell me your favorite resturant. But I’d love to know.

Sometimes I picture you in the youth group. You would be raising money to go on a missions trip. You might even be going with your big brother.

I’d be “griping” about the Mother’s Day Bake Sale and how it’s not a relaxing Mother’s Day for me and we’d all laugh because it’s tradition and we would get in the kitchen all together and have fun.

Would you want to go to Verge Camp? I sometimes picture you sleeping on the bus and playing pranks and worshipping with thousands of teenagers and eating junk food and making silly faces at the iPhone pointed at you so I can see you on Facebook and know that you’re having a blast.

We would have had the “talk”. You may or may not be girl-crazy and you may or may not ever tell me about your crushes.

Instead…

I pack a pull-up in my purse (just in case), tie your shoes and look at the tag velcroed in the laces that reads: “I have autism. I am non-verbal.”

Your life is full of “special” conditions- special needs trusts and guradianships and IEP’s and medical issues and hundreds of things that complicate already difficult to navigate waters.

But in your 15 years, whether you know it or ever will realize it, you have changed my soul more than any typical teenager ever could. You have impacted lives without saying a word well beyond what most do in a lifetime.

Your smile is so genuine and pure, I know that you hold the secret of joy.

Contentment comes effortlessly and while I struggle against the worldly and unimportant, you are satisfied.

I feel lonely for you sometimes. You don’t have friends in the sense your brothers and sisters do. But I’m grateful that they let you hang out in the middle of them, and you laugh and put your hand on one of them to let them know, “Hey, I’m here. Thank you for letting me join in.”

Maybe if you could tell me if any of the things I wish for are your wishes. Maybe it’s my selfishness that wants these things for you that you care nothing about.

Once your Mamaw asked if I thought you knew you were different. I honestly didn’t know then.

But now- I think I know and I think you do.

Does it bother you and will I ever know?

But today, these questions can be left unanswered and I celebrate you, my precious young man who lives his beautiful life simply.

I am immensely proud of you. You, Joshua Neely, change attitudes and hearts. I pray God gives you the desires of yours because I know no one more genuine and deserving as you.

I don’t know if you can or will ever fully comprehend any of this. I guess I really don’t need to know if you do because God knows and He always knows best. What I’m sure of is that I am honored that He chose me to be your mom.

Happy Birthday. I love you.

Eight Months

The year-in-the-making, dreaded day happened exactly eight months ago today.

We’re on the other side. Life is back to “normal”. As normal as it gets for us, anyway.

The six-month follow-up appointment is well behind us. Our surgeon who guided us through for over a year has moved and it all seems a distant memory and like yesterday.

Series of X-rays to monitor progression come down to these before and after pictures of Joshua’s back.

Two rods inserted to correct a just-shy of 60-degree curvature.

Surgery is generally recommended when the curve is around 50 degrees. Josh’s was was progressing rapidly – around five to ten degrees every six months – an indication that it would only continue to worsen.

Such a curvature would most likely cause pain and could press on his lungs, although it may have already been happening.

Such is life with a non-verbal kid who gets frequent lung infections and severe reflux, who acts out aggressively when in pain, creating a constant guessing game of what causes what and what how to fix it.

This severe reflux caused extreme esophageal inflammation and a stricture which caused him to regurgitate his food. He underwent three endoscopic surgeries, medication and nutritional counseling. He had to gain weight and strength. We had to wait for his esophagus had to heal.

So over a year later from when he was originally scheduled to have the surgery, my husband and I once again turned our boy over to a gracious God’s care and a capable surgeon’s hands.

I would later question the decision.

The surgery went as well as it could have – except for a few moments of slight terror when the surgeon said he’d be finished then didn’t get to us until quite a bit later. While we were waiting Jerry said, “I hope this doesn’t mean there are any complications.”

We breathed again when the doctor gave us good news of successful surgery and I quickly forgot my husband’s words.

I reluctantly went home that night leaving him with his daddy and the amazing PICU staff, exhausted but relieved.
Until I received a call at 6:30 from my husband saying he developed fluid on his lung. I walked into a room full of nurses and staff and my son’s body protruded with tubes.

Bi-pap machines and GI tubes, catheters (one pulled out by his own feet), IV’s and PICC lines, soft restraints. Maintaining the balance of enough sedation to keep him still and out of pain vs. not too much for his blood pressure and O2 levels to go too low.

Watching lines and numbers on monitors and listening for beeps and bleeps became a twisted sort of game

My sweet sister-in-law didn’t want me to post pictures of him while he was in the hospital. I really didn’t want to either. But I took a pictures and texted them to her and others.

When Josh had open heart surgery as a baby, there was no such thing as Instagram or Facebook to instantly share every moment of life like there is today.

But even then, Jerry didn’t want pictures of him with all the tubes and how frail he looked. Back then, I wasn’t able to update like I do now and I wonder if that is better. Yet, I wish I had more pictures from then to look back on and realize the fragility of our humanness.

Looking back reminds me of how far we’ve come and that “this too shall pass” although sometimes things don’t pass how we anticipate or how we want.

The “normal” hospital stay of three to five days days stretched to twelve with most spent in the PICU. Jerry had to go back to work so we took shifts- I took days and he stayed nights.

I could set a watch by the time I began to get texts- precious friends who messaged, called, and visited.I felt prayers prayed from far off, and in that room.

I cried and prayed silently facing the wall as my sweet boy had tubes pushed in him and needles threaded through his veins. I watched his face plead with mine as he tried to lift his hands, restrained so he wouldn’t pull the tubes out.

He broke my heart.

One day, I had to leave his room which they inserted a PICC line to administer meds, as his veins were all collapsed from so many IV’s. I went out to the veranda outside the PICU.

The warmth of the sun was welcoming, thawing the chill deep in my bones.”Why did we do this God? Why are we putting him through all of this? Is it worth it?”

The guilt plagued and questions gnawed.

But there was no turning back. I couldn’t let my mind go to the place of something happening to him and it would be our doing.

I knew God had him, but I really didn’t know how much.

One one day much later -as in a couple of weeks ago – I asked my good friend who is a NICU nurse at Wolsfon, when the doctors let you I know when it’s “bad”.

She said they don’t really say much until it’s really bad. And then I asked her, “How was Josh, really?

And she said, “The day after when I came to see him, I was worried.”

I wonder with Josh, how many times God just protects my mama’s heart – how many times He keeps me from “going there” because I generally don’t. I don’t know why- maybe I am naive and it hits me later.

As we face another round of dental procedures done at the hospital in the next couple of months, I remember a recent conversation about the risk of anytime one goes under anesthesia.

Josh has been under more times than I can count off-hand. I’ve said before all this doesn’t get easier, but it does get familiar.

But should it?

I think I need to be be more concerned. More worried. If I’m honest, I feel guilty when I have peace. Resting feels wrong.

I’ve questioned myself over why we didn’t address Josh’s stomach issues earlier, chalking it up to stress over a new school, berated myself for not being as diligent about oral hygiene so that he doesn’t have to have all these dental procedures under anesthesia, the fact that I put my child “at risk” time and again.

One day during out hospital stay, one of the nurses who had worked for an orthopedic doctor previously asked if we wanted to know exactly what the surgery entailed. It was much more evasive than I imagined. At the same time, I was awestruck at how God designed out bodies to heal and regenerate.

Why the surgeon didn’t go more in-depth, I don’t know. Maybe because my husband already had to leave just hearing the basics If I knew everything, I may have run out screaming and saying, “No way!!”.

Should I have asked even more questions?

Am I not the diligent super-special-needs mom I should be?

I want to be the lionness-mom, but sometimes feel like the sheep who just trusts the doctors’ opinions and heed their advice.

I never feel like I do enough. I feel like I don’t pray enough, keep up enough, participate enough.

I feel like I don’t believe enough for things others think I should believe for.

Expectation is often exhausting.

But finally, a smile.

And now Josh is back in school and doing all his normal Josh-things.

And we are going through different trial now. Looking back on all of it reminds me that there is the other side of the mountain that stands massive and seems immovable..

I know the mercy of my Father. But I struggle because I know many whose outcome was not the one prayed for. Is God still faithful?

We know He is because He cannot lie, but my fleshy feelings want to whine and throw a tantrum and yell, “It’s not fair!!!”

Why do some children go through a lifetime in a few short years? Why do some have to endure so much they don’t understand and yet can’t tell anyone how much it hurts or how scared they are or ask, “Why are they doing this to me?”

I don’t always need to know, but I always have to trust.

Finding joy in the journey…

“But How Are You- Really?”

While I’m sure this probably isn’t just a southern thing, my whole life I’ve followed, my greeting of choice- “Hey,” -with, “How are you?” It just sort of runs together and people usually answer with the obligatory, “Fine, thanks,” or “I’m good. How are you?”

We all say it, because let’s face it – do people really want to know how we are? Does the acquaintance I see in the restroom really want to hear the whole, sorted story of my life at the moment? Does the cashier at the grocery store really care what my typical day is like?

True friends love us through our snark and are woman (or man) enough to tell us to get off our pity pot or conversely lend us that shoulder to cry on at just the right time.

The friends that ask, “But how are you – really?” and really want to know. My momma was that kind of friend. I’m so grateful for those friends.

Now, I don’t want to be that special-needs mom who just writes to complain how hard and constant it is, how different or dependent, or sick my child is. I have written such things at times because I think those who don’t live our kind of life need a glimpse in order to give parents and families of those with special-needs the understanding that is so needed and desired at times.

I also have three neuro-typical children and as much as I’ve tried to treat Joshua the same, his needs are different, his development is different, and parenting him is just, well, different.

Parenting any child – babies to young adults and in between, special-needs or not- is one tough job. But it’s the one I love with everything I am.

But some days, dang it, I just want to say, “I’m tired. I’m over adulting and want to just do something fun. I don’t always feel like the “strong mom.” But I have to be to because I am the mom and there is no break, no vacation because even if I were able to get away, my mind would never rest.

But I tell myself when I’m not good that things could be worse and I’m very blessed. Others would love what many of us complain about and that thought flips my gripe into grateful.

When it comes to “those” days with my son, I remember that he is worth every hard thing I must do.

Recently I was asked at church and I responded, “I’m doing very well,” and I truly was at that specific moment.

But then there is today.

And I’m not really sure how I am. I’m doing the daily, but it lingers somewhere behind, creeping up and in as I plan.

Because in one week from today, even at this very moment as I write, my son- the one with Down syndrome, heart condition, non-verbal autism who can’t tell me his pain level or express his fears – will be having a six to seven- hour surgery to fuse rods into his back in order to fix his 60-degree spinal curve.

Preparing by list-making for the week-long stay, coordinating with my older kids about who wants to be there and determining what to do with my youngest distracts me and I welcome the distraction.

This journey to next week should have been over a year ago. A hump/bump I noticed on his back started in motion a roller-coaster I didn’t see coming. We set a tentative date, and then were hit with another challenge that put the spinal surgery on hold.

Joshua had started at a new school after nine-years at his elementary school (he started at age three and we held him back in 5th grade) and he simultaneously started regurgitating his food. We thought it to be adjustment issues – not liking the cafeteria, the noise, the food. We packed his lunch and tried to figure what made it happen.

Finally, we concluded it must be physical and he had endoscopic surgery. He received a diagnosis of severe inflammation of the esophagus and reflux, with a stricture which inhibited his food from going down. After several months of medicine, three endoscopies and seeing a nutritionist to help with weight-gain, we returned to the orthopedic surgeon to reassess.

While the reflux was remarkably better, the scoliosis had worsened and surgery became inevitable.

Joshua is never a “typical” case. Normally, bloodwork and heart tests (EKG and echocardiogram) are done under anesthesia when he has other surgeries. But this time we had to hold him down for them to do these pre-operative tests and he doesn’t understand why and it takes much physical strength (on my husband and teenage son’s part to hold him) and emotional strength because, it honestly breaks my heart to watch.

Surgeries are not new for Joshua. In addition to the endoscopies, he has numerous dental procedures done under anesthesia, ear tubes, tonsils out, adenoids removed, hearing test (because he can’t respond to the typical ones), ear canals cleaned, tear-duct probe, and I’m sure I’m forgetting something because surgeries and illnesses and hospital stays all run together after a while.

But one I will never forget. Open- heart surgery. The first and most daunting.

October 30, 2002 is branded in my mind. The anticipatory feelings occasionally rise up and overtake me even almost 14 years later.

I hesitate to say I’m more “used to” him having surgery, but while it doesn’t get easier, it does get familiar.

I remember my daughter having a tear-duct probe as a toddler (same as Joshua) and thinking it was monumental.

Everything is monumental when it comes to our children.

During one meeting with the surgeon, my husband had to leave as he described what he would be doing to fix our precious son’s back.

I listened.

In the car on the way home, I looked at my husband and said, “I’m going to have to cry for a little bit.”

And while spinal surgery isn’t open-heart, it’s still major and while I am honestly okay this very minute, I’m not sure about the next.

I’m pretty certain that the feelings I had turning over my six-month old to a surgeon to fix his broken heart while mine broke too will most likely resurface as I watch my 14 year-old young man-child be wheeled away as I put my trust in my God and a highly-skilled surgeon.

And I will wait.

And pray.

And cry.

I really haven’t yet cried the ugly cry. Tears have come, but not the real, the body-shaking, tear-streaking, contact-lens fogging, “God, please protect my baby” cry.

There’s something cathartic about weeping. I will let myself at the proper time because I know I will because I know me and I am a mama and I love that boy with every bit of my breath and will fight for him for everything that is in the deepest parts of my soul.

And I know God is listening and will put those tears in a bottle and hold them and hold me and most of all hold Joshua.

So, how am I?

I’m good.

Maybe.

I honestly don’t know.

I’m busy and distracted and putting off the thinking too much. I’m Scarlett O’ Hara and will think about that tomorrow.

I’m grateful as I hear him in the other room making his noises and knowing that when I walk in to check on him, he will smile at me and I will tell him how much I love his face and he will pull it to mine.

And then I may not be okay.

But he will be, and that is all I need.